#BraveLikeAshley
Photo credit: Paige Winslow
Name: Ashley Clemens
Age: 38
Diagnosis: Polycythemia Vera; a rare blood cancer
Years of Survivorship: 13 months
Location: Sacramento, CA
Follow Ashley on Instagram.
“I was diagnosed with an extremely rare blood cancer, Polycythemia Vera, a year ago. I started running trail races in 2012 and then ultras in 2017. This disease has wholeheartedly affected my life, my love for sport, and has changed how I live and look at things. I am sad yet thankful and that is so hard to describe.”
Ashley reached out to us through Instagram DM’s with the kindest, supportive message of the Brave Like Gabe community. “Hello from California! I am so glad I found this page! I am in tears as I write this, mainly because it’s nice not to feel alone. Gabe’s story really hit me.”
As Ashley acknowledged, the beauty of social media is that we can virtually connect and find communities with others who have similar experiences. One of the defining takeaways of her story is that she wants to help others feel like they are not alone in a rare cancer diagnosis. With any diagnosis that is uncommon, it can be easy to feel like no one understands. Also as a long time runner, she’s learned to redefine running while going through her rare cancer diagnosis and treatment.
Polycythemia vera (PV) is rare blood cancer that can cause your bone marrow to make too many red blood cells. There's no cure for PV. Treatment instead focuses on reducing the risk of complications. Due to this reality, Ashley comments, “For me it’s not about finding a cure, but more about managing my symptoms.”
Ashley’s hope in telling her Brave Story is that it resonates with someone who may need it.
How Did you learn you had Polycythemia Vera?
“It started with two panic attacks and no other abnormal symptoms, but I went in to see a doctor. Following a blood draw, I was given results of a blood disorder, Polycythemia. At this point, I was unaware that my diagnosis was Polycythemia vera which is the cancer form of the disorder. Once more severe symptoms started taking place like extreme fatigue and lack of motivation, I started seeing an oncologist and began a chemotherapy treatment.”
How has running or staying physically active affected your journey?
“When I am exploring and running trails, I am reminded of how small we are and how life goes by in the blink of an eye. My accomplishments in sport remind me of how strong I am. I was able to find comfort and trust in my body while I was going through my rare cancer diagnosis and treatment.
I’m thankful that being an athlete has created a relationship of trust with my body and intuition. When I started experiencing symptoms from PV, lethargic, extreme fatigue and lack of motivation from that, I knew something was off.
Running gave me an outlet to feel my emotions and just feel alive. I appreciate running long distances as it is a way to get back to myself. It is a reminder of who I am and what I am capable of. I am convinced that running is going to keep me alive and counteract the impact PV may have on me physically.”
What advice do you have for people on staying fit throughout their recovery?
“Give yourself grace while you heal and navigate your treatment journey. If I had a mile for every time I found myself saying or thinking, ‘Well I used to run this distance so easily…’ Comparing your performance pre and post diagnosis will not change a thing. This led to changing my mentality and relationship with running entirely, which has been tough but needed. Staying active and still going out on trails has kept me healthy, mentally and physically. Redefining my relationship with running was something I didn’t expect. I use it as a way to relax and slow down, instead of it being an outlet of competition and racing. I will get back there someday but right now it is about slowing down and stopping to hug the trees.”
“I am convinced that running is going to keep me alive and counteract the impact PV may have on me physically.”
What are some of your proudest accomplishments?
“My proudest accomplishment is summiting El Capitan, on foot, in Yosemite. It was the most memorable and empowering experience I have had in my running ‘career.’ The most beautiful routes with stunning views are something I will never forget. As a caregiver, before I had cancer, my proudest accomplishment during my career was at The American Cancer Society. I lost my mom to an extremely rare form of breast cancer. It all happened within 6 months. I worked with Berkeley city council and the superintendent to create the inaugural Relay For Life of Berkeley. Through working with my volunteers, sponsors and community, we raised over $20,000 for cancer research, treatment and education. That will always be a labor of love for my mom. Her story is very intertwined with my own and she’s left a huge impact on my life.”
How has Gabe's story impacted you or changed the way you view life as a cancer patient/survivor?
“What really drew me to Gabe’s story was how important building community was to her and this cause. When you are diagnosed with such a rare disease while being seen as healthy, it can be mentally jarring and isolating. When I read an interview, with Gabe commenting on her passion for building community and bringing people together, I cried. I felt like someone finally got it. What a legacy to leave behind: to touch people and help them feel less alone even after you’re gone. It gives me chills. I also respect her work ethic and tenacity on not giving up, even when she knew she may lose. Her story was a reminder to me to keep trying and getting out there. To keep working towards a goal, even if you know you might not see it finally come to fruition.”
What does being #BraveLikeAshley mean to you?
“Being soft yet strong. I want to show my vulnerability, but also how capable I am in overcoming those times of sadness. I love our sport and community so much because we get to be brave by reaching goals and we can also ask for help (crew and pacers) along the way. So being brave like me is showing it all. Sharing the tears and the cheers at the end of the race.”
What are you most looking forward to in the near future?
“I want to circumvent Catalina Island, 50 miles, in a day. I DNFd last month at the Avalon 50 mile race, which was my first DNF ever. I am looking forward to going back for redemption.
I am also super excited to share that I’ll be going to the Italian Dolomites in July 2024 as I am going to be a part of Billy Yang’s trail running documentary. This week-long experience will be doing the Alta Via 1 trail and I have never done anything like this before. I am going to be training on the Western States trails leading up to this because I live near Auburn. My rare cancer diagnosis is not going to stop me. It might change things, but I want to keep going and doing things that make me happy.”
